WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

I have had SLE for nine years. It attacked me ferociously in my freshman year of college. About 6 months prior to that one of my closest friends told me she had Lupus. I'd only heard of it on One Life to Live. The character who had it died. My friend has 4 kids. She thought she was going to die. I tried to be supportive but didn't really understand....then 6 months later, BAM! I got the same thing. Weird? yes. I now understand her more than anybody around us. 

Since the first attack, I've had flares every year that require hospitalization. Currently-summer 2009, this flare started in late 2007. It's the longest time my disease has been active.

I started college in 1999. The stress of living away from home for the first time, plus classes













and exams, and trying to make new friends was hurtful. I stopped eating













and lost 20 pounds. When Spring rolled around I thought I could handle














my new life and excitedly signed up for Spring Break in Baja. Three













days before we left, I developed a rash on my neckline. Campus health office thought it was a mild allergy, gave me Prednisone and told me not to drink. I did not listen. It was Spring Break! Unfortunately, my first night in Baja I had a high fever and chills accompanied by nausea and my little rash? It started to evolve into blisters. By the time I made it home 4 days later my mother worriedly sent me to an urgent care clinic. They also prescribed Prednisone. It must have not been enough. The blisters spread out all over my back, my torso, the soles of my feet, my hands, my mouth, and my eyes were swollen shut. The only place I had no blisters was my legs from above my kness to my ankles. Oh. And these blisters were painful. PAINFUL. My skin felt like it was on fire at all times. I wanted to die to stop the pain. Nobody should ever have to feel that pain. I went to five doctors and no one could figure out what was wrong with me. I had so many skin biopsies. The blisters would take a few days to get really hard and PAINFUL and then they'd pop on their own or my doctors would drain them. That resulted in open lesions all over my body that took weeks to heal. Open lesions that emitted a smell like something rotting--oh, yeah that was me rotting. They gave me every pain killer known to man and still I screamed. Even when the morphine or demerol seemed to calm me I was still screaming in my head. This all happened in a matter of weeks. Plus I had an HMO. They didn't want me hospitalized. They kept telling the hospitals to send me home. My doctors were amazed that I was so sick and they were cavalierly saying, give her some pain killers and send her home. It wasn't until I was reffered to a dermatologist in Los Angeles named Dr. Keith that I had a real answer. He took me back and I realized I had been presenting symptoms longer than one month. He immediately suspected Lupus as he'd had a patient the month before with similar signs. He ran some tests, told the HMO to back off and saved my sanity as well as my life. He immediately increased my Prednisone to super high levels-I'm talking 100 mg tapered down to 80, then 60mg. We had to attack the Lupus as strongly as it had attacked me. 

Thanks to Dr. Keith we got the Lupus under control. Then about two years later I'd lost my insurance and had to be rushed to a county ER for difficulty breathing. Pleurisy. They discovered a DVT while running tests and also Kidney involvement. Biopsies confirmed the Kidney diagnosis and I started Cytoxan followed by CellCept. I'm on Coumadin for life. And I need hip replacements from all that Prednisone. In 2006 my nurse casually mentioned, you know you have Discoid Lupus too, right? Um, not until right then I didn't know. My hair has fallen out. My face is always red and dry and when it's really bad, my face is bleeding. That's the physical stuff...oh, I find I forget things more now.

I had an infection that no antibiotic could kill and infections can kill a Lupus patient. My doctor opted to surgically remove that infection which had taken residence in my left lung. Part of my Lung had to be removed.

Emotionally...as any of us who have Lupus know there's been mood swings, anger bursts, depression, anxiety. I thought I had conquered the pain of losing the old me- the healthy Lily. But I haven't. I wonder if I ever will.

Recently I found TWO support groups in my area. I've looked for just one for years with no luck. My friends don't really understand except the one that has Lupus and my family isn't very close. Last year I was fortunate to have participated in the AdCoucil's Lupus awareness campaign. Thanks to connections I made while working on that, I found the two groups. I've been to my first meeting with both groups and I feel like I finally have a place to be me, Lupus and all. One of the women from the groups sent me the link to this site where I hope to make new friends.

Born in the early '80s. Never married. not sure I want to be married, but am sure that I want to have children. I have three cats and two Chihuahuas. I love to read, listen to music, talk with friends online, watch t.v., and spend time with my family and pets. I also enjoy playing video games.

I participated in the Ad Council's Lupus awareness campaign which has finally been released! Check it out!

http://www.youtube.com/watch?v=7fhzjLb23_w

http://www.youtube.com/watch?v=jot4Atvh3e0

Graduated from high school in 1999. I started college that fall at ULV. Had to leave school in the Spring semester because that is when I started getting sick. I want to return to school, but my medical history has not been kind to my plans.

Human Being

The Wedding Singer, The Lake House, Finding Nemo, Wall-E, Office Space, Superbad, zach and miri make a porno, Mean Girls, The Blair Witch Project, 1408, The Shining, Vantage Point, Disturbia, horror movies, comedies, thrillers.

Rock! some rap. Duranguense, reggeaton...country.

Carne asada with homemade guacamole and rice. PIZZA! Lemonade, MANGO, ice water. Rocky Road ice-cream, Pecan Praline ice-cream. Lemon/lime on almost everything, Ceviche tostadas, Tacos de Lengua, and Birria.

A Tale of Two Cities, The Shining, IT, The Stand, Confessions of a Shopaholic, The TWILIGHT series by Stephenie Meyer. I like Horror/scary books.

Systemic Lupus Erythematosus--2000, Discoid Lupus--2006, AVN in BOTH hips due to Prednisone, DVT.I also have Kidney involvement.